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Provigil

Just saw this post and wanted to let you know that Provigil is the only reason I'm still awake. First started off on 50mg, now on the final dose of 200mg. It really worked for a few months, but now not as well.

Actually, I was getting on the board to ask someone about Provigil. My rheumatologist gave me this last week to help treat the chronic, debilatating fatigue that nothing else
has worked for. It does help, but I have some concerns. 1) I can't find anything were this has been tested for lupus patients. 2) it is not recommended for long term use because it is very habit forming. 3) if we are taking medicine to keep our bodies going, how do we know that we need to rest, so therefore will it make the lupus flare worse? I have been on it for one week and I have only had to take a nap one day. I can actually make it through a day like a normal person. I can see where this can be very addicting. The only side effects I have had is an occasional headache. My rheumatologist is a big believer in this med and states she has had success with several lupus patients. If anyone has any experience with this med or any input please reply.
Angela

Provigil

I have Provigil to take as needed. It does help wake me up, but it can make me feel kind of jittery, like I've had too much caffeine. That's the only side effect I've noticed. And it's not like you don't sleep. You just take it in the morning and it helps you get through the day without needing a nap. You still sleep at night. I just use it when I have to, but don't take it when I don't need to, like on weekends. Then you don't have to worry about addiction or effects from long-term use.

provigil

Just wanted to amend my previous message. I just stopped taking this medicine. It was helping keep me awake, but made me an awake zombie. I was getting extremely cranky and had anxiety. I would rather be tired!!!! Geez I hate medicine side effects.

provigil

From what I am reading, most of you only take the med as needed. Then, how do you make through the other days? Please share your secrets. I have now been on it everyday for a little over 2 weeks and it worked very well in the beginning. I still get a dull headache every day, but now I start getting tired about 3-4 p.m. I know I am only on 100mg, but this is where that addiction cycle starts. You now, when your body requires more medicine to get the results you want. This is not the kind of life I want, to be addicted to medicine to function every day. There has got to be something better out there for the chronic fatigue. Please share any new ideas with me. I see my rheumy again on the 28th and we may have to come up with a better plan!!!!! Thanks to everyone who has shared their experience with this drug. It does help to see what others have been through.
Angela

Hi, Angela

There is actually a research study under way right now about the effects of provigil on lupus "brain fog". So hopefully, we will learn much more about how effective this drig is in lupus patients.

Unfortunately, fatigue is one of the most commn and most debilitating effects of lupus. Before doing anything, it's important to be sure that your fatigue is not caused by an underlying medical condition other than lupus - such as anemia, hypothyroidism, fibromyalgia, or sleep apnea - because these problems require different medical treatment. If your doctor has eliminated other reasons for your fatigue, then lupus is probably the culprit. Some people notice that their fatigue improves when the lupus is less active. Plaquenil improves fatigue in many people, but it can take up tp six months to see any real benefits.

I know it sounds crazy when you're too tired to move, but exercise is one of the best treatments for lupus fatigue - preferably a gentle aerobic exercise like walking or swimming. It's important to start slow and not overdo. If there is an Arthricise program in your area, your doctor can write you a prescription to get into the program. Exercise is also important in managing arthritis symptoms and preventing osteoporosis - both critical for lupus patients. The hardest part is finding the energy to get started, but it does help. Yoga or tai chi can also help maintain strength and flexibility. Exercise also improves depression, which can be a major problem for many people with lupus.

You might ask your doctor whether DHEA would be okay for you to try. Some doctors are now recommending it for lupus fatigue and cognitive symptoms. Another supplement called NADH (or enada) may also help fatigue. If you are consistently having fatigue in the late afternoon - low blood sugar may be the problem - so you might want to take a closer look at what you are eating at lunch. If your fatigue is severe, you might ask your doctor about UVA1 light therapy. There are some questions about whether this therapy is completely safe for lupus patients, who are very sensitive to UV light, but there have been some good results. So it's worth asking about.

I've found that if I can rearrange my schedule to have a midday nap, even 20 minutes or so, it helps me function better. I also rely on music to keep me more alert - I use a sound/aromatherapy machine at home and in my office. It helps me stay more alert and focused. I also have to really careful about wha I eat during the day because a high-carb meal makes me incredibly sleepy afterward. Relying on colas or sweets for a quick energy fix is probably the worst thing you can do for lupus fatigue - it may keep you going for a few minutes but the rebound is bad.